Working Out with TN/ATN

General General TN & GPN (Old Site)
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Hello everyone!

I had an issue when I stopped working (it was physically demanding and went to doing nothing) so eventually everything would start to catch up if I didn't make some changes. I was wondering if anyone else is working out and what your routines are. I know it is really hard going to the gym (even to think about what you are going to make for dinner let alone running and working your butt off) when you are in so much pain all the time, I still try and go 4 times a week atleast and have changed my diet to see if it helps. So far it hasn't but my body feels better!

Because blood flow has such a negative affect on TN and ATN, bending over, doing squats, exercises where you have to move your head can put you in bed for days. When I first started exercising there where many days I was bed bound after working out because I had pushed it too hard and tried to push through the constant pain.

This is my workout routine wondering what everyone else does? *All my workouts are on machines that keep the movement of my head extremely minimal*

6 mins of cardio

10 reps on leg press, 10 reps on lateral pull down

2 mins of cardio

10 reps of leg extensions, 10 reps of chest presses

2 mins of cardio

10 reps of leg curls, 10 reps of lateral row

2 mins of cardio

10 reps of calf raises, 10 reps of shoulder press

2 mins of cardio

10 reps of lateral push down, 10 reps of bicep curls

2 mins of cardio

-repeat this one more time-

* I find if I'm doing floor exercises I have to stay down until it's down and can't add anything else it causes my pain from a steady 7 to 8-9 instantly*

on floor mat - 30 secs of bent arm side planks, 15 reverse leg cruches with exercise ball and repeat.

If I feel my pain level is raising I tend to cut out the cardio for the day so I can make it through the rest of the workout. Also take my time and breathers if needed. Anywayss just curious as to what everyone does! Thanks!

Hopefully you all find relief sooner than later :)

Em

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Hi Em, I was super excited to read your post and I want to say you are doing an awesome job!! I was diagnosed with type II in December 08…and spent the next 2 1/2 years mostly in bed. I lost most of the muscle tone in my body and had to go to physical therapy to regain enough strength to walk. I had an unsuccessful MVD during that time and many nerve blocks. I saw so many doctors I cant even remember. I was so drugged I couldn’t even function enough to care for my 2 young kids. Since this time I have worked so hard to regain what I lost and had the placement of a nerve stimulator. I am on a great med regime and completely off narcotics. I used to run and one day I decided the time has come to dig out those old shoes. I run 5 days a week weather permitting and pain permitting. I still have some bad days so I give myself a day in bed here and there. I have come to accept my diagnosis and try to make the best of my life. I love running and my lifelong dream has been to run a marathon. I am 40 and still haven’t done it. But, right now I am training for a 5 mile race in July to support research for a cure for trigeminal neuralgia. It is called RACE TO SAVE FACE!! I wait for the lowest pain part of my day and get out there. I wear scarfs and hoodies to shied my face. The exercise gives me some natural pain relief that I look forward to!! Keep up the good work Em I am right there with ya fighting through it everyday!!

1 Like
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Em and Lisa...so proud of you both. We all know it takes alot of strength to overcome the physical limitations and constant pain on a daily basis, not to mention the emotional struggle that can be fierce as well. I think it is safe to say that we all have to go through several stages in an effort to mentally deal with the pain, and then even more just to talk ourselves into the fact that we are are strong enough to acheive our goals, regardless of this diagnosis. I know for myself that it is easier said than done. I, too, am at the point of acceptance and am facing a huge cleanup effort, especially with regard to regaining the confidence needed to address and repair the big things, like the broken dreams and relationships which would normally be my inspiration in the first place. You are a great example and source of hope to those a step or two behind you, that getting back to excercise and other daily activities is possible and even helpful in dealing with the rest of it. Anyway...I wish you the very best.

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Lisa26 said:

Hi Em, I was super excited to read your post and I want to say you are doing an awesome job!! I was diagnosed with type II in December 08..and spent the next 2 1/2 years mostly in bed. I lost most of the muscle tone in my body and had to go to physical therapy to regain enough strength to walk. I had an unsuccessful MVD during that time and many nerve blocks. I saw so many doctors I cant even remember. I was so drugged I couldn't even function enough to care for my 2 young kids. Since this time I have worked so hard to regain what I lost and had the placement of a nerve stimulator. I am on a great med regime and completely off narcotics. I used to run and one day I decided the time has come to dig out those old shoes. I run 5 days a week weather permitting and pain permitting. I still have some bad days so I give myself a day in bed here and there. I have come to accept my diagnosis and try to make the best of my life. I love running and my lifelong dream has been to run a marathon. I am 40 and still haven't done it. But, right now I am training for a 5 mile race in July to support research for a cure for trigeminal neuralgia. It is called RACE TO SAVE FACE!! I wait for the lowest pain part of my day and get out there. I wear scarfs and hoodies to shied my face. The exercise gives me some natural pain relief that I look forward to!! Keep up the good work Em I am right there with ya fighting through it everyday!!
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Lisa26 -

You have had quite the battle to regain so much of what you had lost. CONGRATULATIONS!! That is amazing news and I hope you do run that marathon! Running is so hard, that's amazing that you have powered through it. I think after having such a battle, all those small steps forward feel incredible and make you strive for one more. Keep up the good work!! :) P.S Good call on the scarf and hoodies! It might be hotter but it's less painful for sure!

Melinda Marie-

Thank you for your kind message! I hope that everyone can strive for their goals. We all deserve to have them. Trying to regain so much of what was lost through the struggle of being diagnosed and not understanding what was happening can be so damaging. Good luck with your "clean-up", we can live a normal life, always now unfortunately with some exceptions but we can do it! Congratulations on your steps ahead! :)

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this makes me smile.... Janaury 2011 I began a great excercise program....have been doing it for a year,until this March when this TN crap started. I had lost 48 pounds and dropped like 4 pant sizes. Unfortunatley this all came to a screaching halt in March. I got direalize that i most likely will have to start off slow and probably not in the dzy, it made my headaches worse...etc. i have already gained back 8 pounds. I am not happy about any of this. I just started the gabapentin last week and I really really want to get back to the excercising. I realize that I might have to start off slow and, maybe not do the group classes I was with, but just knowing that you guys were able to return to excerise gives me so much hope at a time wheni need it most!

any suggestions how i should start off? I can't afford to over do it and miss any more work, between being overmedicated, stab brain attacks and dr.s appointments, i am missing too much

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Hey! It sounds like you are new member to this pain as well. Mine started in October 2011. I have been back to the gym for about 3 months now. You may need to change your diet if you haven't already. Such as going gluten-free, lots of protein and sugar-free. It will help keep your weight managed until you feel up to going back. Try starting at home with a program, than if it becomes too much you can just turn it off. The wii Active 2 program is great. It actually took a lot of trial and error before I was able to figure something out that worked for me. Congratulations on losing so much weight! I used to do, Zumba, Spin, and Group Power classes before the ATN started, I do not try to do any of them now because I would feel like I would have to keep up to the class, unfortunately the pain stops me short sometimes. Start off with a little cardio and some weights. Once you get comfortable try adding more things. Way to take the first step to getting some of your life back! :)

Em

Yvette said:

this makes me smile.... Janaury 2011 I began a great excercise program....have been doing it for a year,until this March when this TN crap started. I had lost 48 pounds and dropped like 4 pant sizes. Unfortunatley this all came to a screaching halt in March. I got direalize that i most likely will have to start off slow and probably not in the dzy, it made my headaches worse...etc. i have already gained back 8 pounds. I am not happy about any of this. I just started the gabapentin last week and I really really want to get back to the excercising. I realize that I might have to start off slow and, maybe not do the group classes I was with, but just knowing that you guys were able to return to excerise gives me so much hope at a time wheni need it most!

any suggestions how i should start off? I can't afford to over do it and miss any more work, between being overmedicated, stab brain attacks and dr.s appointments, i am missing too much

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yeah..noise is a big trigger for my stab attacks so group excercise is off the table for now...maybe gym? I actually was ok with the headphones last week for mri...., may have to uncover the treadmill at home, but even as i type this i know there is no way cuz of the noise it makes.

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Im really sensitive to noise too. The headphones actually help a lot with low music. Try listening at home and see how you react. I would only do machines that keep you upright and with minimal head movement for now.

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I work out nearly every day -- maybe once a month when I'm in too much pain I'll skip it, but I find that forcing myself to go helps me keep it together overall. I don't do much weight lifting or running anymore, because high-impact seems to set things off. I like biking, swimming laps, or a vigorous yoga or pilates class -- intense workouts but low-impact in terms of jarring. If I work out outside, I cover my face with a bandanna/sunglasses to block the wind. The pain bothers me less while I'm working out, but it is frequently worse afterwards, particularly if I've overdone it (which I am always tempted to do). I've had some huge weight fluctuations with various meds, and being active helps with that. It's also something positive to look forward to every day, because otherwise like many of you I do a lot of sleeping, staying in, taking medications, and just trying to keep it together. And hanging onto the routine is a major triumph when a major portion of my life is pretty much out of my control. Working out with friends is also a good way to maintain a social life that doesn't revolve around drinking or staying out late, since those are out of the question for me.

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I do karate. I had signed up about 3 weeks before all the TN started and had to take a month off karate. But the type that I do have classes going every day of the week so I just go on the "good" days when both myself and hubby are off work and he can look after the kids while I go. The any day of the week appealed to me, it means I can go when I feel well enough. My legs are still sore from all the kicks 3 days ago haha! Apparently you can burn up to 1000 calories in a 1 hour karate class.

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I refuse to do "typical" exercise - as there is no way to stay with this boring crap

I have decided to keep my cheapo gym membership for the use of the hot tub and an occaisional dance class - or maybe a nice swim

I have dance games and cds at home, wii, bellydance, hip hop abs, zumba --- makes me smile

I will walk the dogs, cheek willing - and consider that my movement for the day --- 3 dogs have to divide into 2 walks

Yoga on DVD and Brazillian Butt are my two latest passions

Will never need to do another treadmill or crunch again! If its fun - it's not such a struggle for me

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Don't know if anyone is still following this thread or not: I do Pilates on a regular basis. I had a "break through/flare up" of my TN a few weeks ago and now trying some different meds. Last week in Pilates we did some inversions. . I had a huge flare up a few hours later (but I was also angree with my TN twitches)

Does inversion and/or more blood into the head cause more flare up? But during exercise it was fine. Hours later? How could this be?

Thanks everyone.

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I like swimming laps -- as long as the water temperature and the fit of my goggles is right, it feels fine and provides both cardio and muscle workout in a pretty steady way. I would just try out a few things. I do vigorous yoga, and when the class does something I don't want to do, the teacher helps me pick something equivalent (any good yoga teacher does this, and most do private consultations to help you customize). But I find that I can work up to most things, and it's just pushing too hard beyond my current ability (usually based on stuff that I used to do easily!) that creates face pain.

I also was very active before this started, gained about 30 pounds (meds, lots of time in bed, being totally out of sorts), lost most of it, and am now just trying to maintain despite the inevitable and lengthy ups and downs with the pain.